M.E Awareness Week: Day 3.

AYME.

A website popped up, headed AYME. There was some information about the disease; it’s diagnosis, possible causes, and treatments, as well as some information about the website itself. It was a chatroom similar to Facebook, and aimed at children and teenagers with M.E. They were a charity who operated the website, sold books about M.E, ran a helpline phone service, and a postal service between members of the forum.

Within a month I had signed up, received my membership, and posted for the first time. I was welcomed by lots of people of all ages up to about 25.

AYME had five main categories where you could post.

The first was Chat; here people talked about the lighter side of life. There were discussions about fashion and hair, sport, hobbies, books, music, shops, and there was the usual banter between friends. We could send each other “Get Well Soon” and “Happy Birthday” messages, and it was an easy way to access support when we weren’t feeling very well.

The discussion forum was used for more serious topics, such as diagnosis, medical practitioners who mistreated patients, religious beliefs, financial affairs, relationships, work and school, and all about how the symptoms of M.E could affect everyday life.

Education and work was used for talking about CV’s and job applications, options for school, home tutoring, and everything else to do with school and work. It was here that I discussed my options for AS-levels with other teenagers who were older and more experienced than I was, and I managed to help plenty of people with their GCSE homework, in particular Maths.

Then there was the medical forum, where different therapies and treatments were discussed. Medical reports about M.E and research into it were commonly posted there, as well as people asking for help with medication, physiotherapy, and whether using a wheelchair was the best thing to do. I found out that eating small amounts regularly, mainly savoury carbohydrates such as pasta or wholemeal bread could boost my energy, and maintain it throughout the day. I also discovered that a back massage or hot water bottle was useful for easing muscle pain. A hot shower was also capable of easing pain. Then, I managed to find lots of other sufferers who had received G.E.T, and gone through exactly the same as me. We agreed that G.E.T shouldn’t be used as a treatment for M.E, as nine times out of ten it failed, and the rest of the time it never made any improvements.

Finally, there was the thread for Games. We played lots of little word games, such as anagrams and forming lots of new words out of one old one. We asked each other silly questions, and dared each other to do daft things. We had the freedom to act like the children and teenagers we were, despite having M.E.

AYME became a lifeline to me. It was essential support, and a very important charity. It did very good work.

I received letters from other members of AYME via the special postal service on a regular basis. It was very welcoming, and cheered me up when I felt sad. I kept every single one, and stored them in a box of special memories, photographs and diaries. They deserved to be there. I often rifled through this box whenever I felt lonely or disheartened by my circumstances, and they often revived my spirit. I was amazed by the help and support, and I was glad because I was able to help other sufferers, even if they lived on the other side of the country.

There was never any cyber-bullying because AYME was monitored by adults. It was expensive to do, but it made the site a lot safer than Facebook or Twitter, where a lot of AYME members got bullied just for having M.E.

AYME was the single best thing about having M.E, because I would never have found it or be allowed to join without suffering from the disease myself. It provided the much needed friendship and support I had longed for, and I was able to advise others too. It was what I had so desperately needed to keep me pushing through the disease, which at times took an awful lot just to find the motivation to keep on going. AYME was everything to me in my hour of need.

School.

Mum had lots of blood tests and appointments at the GP that January. It turned out that she had an overactive thyroid gland, which caused the weight loss. It would also cause spells of where her body temperature soared, and then plummeted. Her hair began to thin out drastically. She was referred to the endocrinologist at the hospital, and with a little trial and error they managed to give her the correct dose of medication to stabilise the condition. For the time being her weight was stable, she even managed to gain a little.

Mum was still struggling to breathe, although the chest infection had cleared. She was diagnosed with asthma. Not only did she have to take two different inhalers, she had lots of tablets to take as well. Some widened her airways, others were anti-histamines. She was advised not to hang clothes outside to dry in the summer as pollen would get caught in them and irritate her lungs. She was also banned from pushing the wheelchair, as it was hard work in our sloping and hilly city. The strenuous exercise would do her far more harm than good. However, the asthma seemed to settle down, and life became a little more peaceful.

***

As the time passed, and Easter 2012 approached, the M.E seemed to get a lot worse. Even on my reduced timetable I was struggling, and had to take lots of time off. This meant I missed a lot of work, and then I had to do extra to catch up. This would then cause further illness. It was a vicious cycle. I had a poor concentration span, and weak short term memory. As always, I suffered from the back pain and headaches I had had since the meningitis over a year before.

The longer I took off school, the more frustrated I became. Missing lessons meant I missed some vital information from the teachers, and my final GCSE exams were fast approaching. I also missed my friends when I wasn’t in school, and when I was in school they wanted to walk around at breaks, so I was either left out or making myself ill again.

When I was at home, ill, I began to brood. I had spent over a year of life in illness, and felt no better. It was a year that I felt was wasted. It should have been spent being a teenager, fooling around with friends, and enjoying the last carefree years of my life. I would never get the time back, and I was still losing precious time.  As far as I could see I was failing everyone, as well as myself. The expectations for my GCSEs were extremely high, and the pressure was incredibly hard to cope with on top of everything else. I felt useless, and worthless. My self-esteem was non-existent. I felt rejected, hurt, angry, lonely, confused and depressed. I had forgotten what happiness was, and how it felt.

I went back to my GP, and after talking for a while, he said I had depression. He referred me to CAMHS, a child mental health service, and then could do no more. I couldn’t start taking proper anti-depressants whilst using the amitryptiline, and couldn’t use them as anti-depressants until I was seventeen.

As my physical health deteriorated, I became more dependent on my wheelchair. Eventually, I could barely walk without it, and was denied the use of it around school for “health and safety” reasons. This meant that my attendance got even worse, but school just shouted at me and told me I was being lazy and attention seeking. This, of course, did nothing to lift the depression.

Eventually, dad would drop me off at school in the wheelchair, and mum would pick me up in it, while I walked around school all day. Mum had no option but to pick me up. Any friends in the community worked, or had children of their own to pick up at this time. Dad worked in Rochdale, and he was the only one well enough to bring in money, so he needed the job.

My depression grew worse, and I was still waiting to hear from CAMHS. No one could see how desperate our situation was, and how unnecessary it was, too. If people just compromised and helped me, I could improve my attendance, and keep everyone happy.

I asked about using my wheelchair around school again and again, until eventually they got so sick of my pestering that they had to comply. It wasn’t the best way to get it, but it was essential. However, school simply refused to give me an assistant to get me round the school. This meant my friends had to do it, and I had no access to the disabled toilet. I was also told that I had to sit my exams in the main exam hall, despite the fact that there wasn’t decent wheelchair access to my table, which was in the middle of the exam hall. This increased my stress levels before an exam immensely, which didn’t help.

I was finally rewarded extra time in my exams because I couldn’t write fast enough without hurting my wrists and my concentration level was very poor. As I was in the hall with everybody else, that meant that they were talking and clattering about as I finished my exam, which destroyed the advantage of extra time. I was jeered at and catcalled too; told that I was clever so didn’t need the extra time. According to them, I was also pathetic. Still, I did the best I could possibly do, and I knew that when I put the pen down at the end of each exam I had done all that I could. There was no more to do.

I was in my final GCSE year; therefore I got full exam leave. The worries about extra time, wheelchair access, and assistants evaporated into thin air. However, a new problem reared it’s very ugly head.

Whilst I had been in school, I had been able to keep close contact with the girls I called my friends. However, now that I was out of school, there were no text messages, no phone calls, no emails, and no visits. I tried to make contact with them, but to no avail. I couldn’t go and visit them as Dad still had to work, and I couldn’t let mum push me to my friends’ houses when it was so unnecessary. I kept telling myself that the next day I would hear something, but I never did.

It was devastating. I often wondered if I had done something wrong, and kept wishing that my friends would tell me and that it could all be put behind us. The stony silence was eerie and cold. Was I really that lazy and attention seeking girl that everyone else said I was? Was that what my friends saw me as? Had I said something, or done something to hurt somebody?

I spoke to others on AYME, and they provided the best support that they could, however, they couldn’t bring me everything that face to face friendships could.

I was heartbroken. What should have been the best summer of my life, was once again wasted in pain and misery.

M.E. Awareness Week: Day 1.

How it all began.

It began on a perfectly normal day. On Thursday January 6th 2011, while other people were busy attending school or work, or trying to lose the Christmas pounds, I contracted viral meningitis. At first it was a headache and a high temperature, and then I couldn’t stand having lights on as it hurt my eyes. Then I got a stiff neck, which was extremely painful.

My mum was worried- this wasn’t your average winter cold or even flu. I was never a sickly child, and I didn’t make up excuses to miss school. She typed my symptoms into the NHS website symptom checker, and within five minutes a doctor had called her back.

He asked mum if I had a rash anywhere on my body, which I didn’t. He then asked if I could remember my name and date of birth, which I could. Next, he spoke to mum without me, and explained the situation. Even though I didn’t have a rash, I had viral meningitis. Viral meningitis is not as severe as when it is caused by bacteria, as the bacteria can cause septicaemia, loss of limbs, and even be fatal. However, viral meningitis can still be very unpleasant.

He told mum to get some ibuprofen down me, as this should bring down my temperature. If my temperature didn’t come down within the hour, I would be flown out to Sheffield Children’s Hospital by helicopter, where I would be placed in isolation.

Fortunately, once I had taken the tablets, my temperature decreased to just within the normal range.  Now it was no longer a matter of life and death, but it was a waiting game. I was told to stay hydrated, clean, and well fed, and I was told to rest in bed for the next two weeks. This caused a problem.

In less than two weeks time I had to sit a couple of exams, one in Citizenship, and one in Biology. Mum contacted my teachers, and my Citizenship exam was postponed until the summer, where I could sit it along with any resitters. However, science insisted that I take the Biology exam, regardless of my condition. I was promised a well ventilated room, with a bottle of water. The exam would only take 45 minutes, and I was good at Biology, so I wouldn’t have to revise very hard.

The thought of sitting an exam with meningitis didn’t even bother me. Despite doctors advice I ploughed on with revision, and prepared myself as best as I could for the exam. Thinking I knew better than a doctor with years of training and experience was not one of my greatest moments, and is also one of the biggest regrets in my life.

The week leading up to the exam is very clear in my memory. Once I could sit up and lean against my pillow for more than a few minutes it became much easier to pass the time. As well as revision, I played games, read books, solved logic puzzles, and listened to music. I distinctly remember leaning back on my pillow and watching a light flurry of snow drift past my bedroom window, the day before the exam. It looked so peaceful. I, on the other hand, was not peaceful, or certainly not on the inside. I was fuming. Why did I have to get meningitis? Why did I get it just before my exams? What had I done to deserve it? Little did I know of what lay ahead.

When the day of my exam arrived, I just wanted to get it done and over with. I wasn’t especially nervous, just anticipating what sort of questions I would be asked.

I was taken to a side room as promised, but the window was jammed shut and there was no bottle of water. I shrugged off my blazer, which was the stuffiest part of my school uniform, and settled down to work. The 45 minutes passed all too quickly, and before I knew it I was handing in the exam paper. I could only hope that I had done well.

I barely had the strength to get into my pyjamas when I got back home again, and I slept for the rest of the day. I never realised how much energy exams took out of you.

***

I returned to school the following week; pale, tired, and simply wanting to put my experience behind me. I only did a part time timetable at first, as this was all I could manage, but gradually I built myself back up to full time. I attended the important lessons such as English, Maths and Science, and then returned to art, ICT, and performing arts.

It was a blessing to be out of bed and distracted from my circumstances, as every time I returned from school, I also returned to bed rest.  Inside, I knew I was still doing too much, but I didn’t believe that it would hinder me, and I wouldn’t even admit as much to myself. The only way I could see my situation was to plough on and push through it- the only way back to health was to force my body back into shape.

After a few weeks, I started doing P.E and Dance again. I didn’t have a doctor’s note to excuse me, and I was worried that my physical fitness was slipping too. I also began to drum again, so that I could perform with the bands I was in. I loved being behind the drum kit; it became a sort-of refuge.

I was dimly aware that something wasn’t right; however this feeling was overwhelmed by a strong sense of crushing anger. I felt I wasn’t achieving my full potential, and I still felt ill. I jealously watched everyone else be healthy and active, and this envy drove me on. I was even disappointed when my exam results came out, and I had “only” got a B for my Biology exam, despite having meningitis at the time. Had I been healthy, I could have got an A, or maybe even an A*. Looking back, I realise what an achievement that B was, in the circumstances, and it is one of my proudest prizes that I have achieved so far. I am also proud to say I refused to re-sit that exam, even though my teachers said it wasn’t good enough.

***

I had been told to allow myself a recovery period of six months from the illness, as my body needed time to recuperate and repair itself. However, six months after the disease, I still didn’t feel any better, if anything I felt worse. I had a constant ache, comparable with the type of ache got with flu, and all over my body. I had a permanent headache, so that sometimes intense light hurt. My back and shoulders were always hurting, and I could no longer rest lying flat on my back as the pain built up to unbelievable amounts. I still struggled with extreme fatigue, as if gravity had been increased or I was wading through thick mud. TV and computer screens could only be watched for a limited amount of time as they made my eyes itch and water. My concentration span and short term memory were also deteriorating by the day.

I was worried, as I was about to sit my next set of exams, and didn’t know if I could cope with them feeling like I did. Therefore, I went to my GP, before things were allowed to get any worse.

“There’s a disease called M.E.”

I saw a GP who I had never met before, and he was one of the rare doctors who is prepared to sit and listen, and doesn’t make you feel inexplicably small. I explained what had happened to me concerning the meningitis, and how I was still suffering from tiredness and other symptoms.

Once he had heard me out, he sent me for some blood tests to eliminate diseases such as anaemia that could cause the fatigue, and contribute to symptoms. He also discussed the possibility of me having a disease called M.E (Myalgic Encephalomyelitis), otherwise known as CFS (Chronic Fatigue Syndrome). There were no blood tests specifically for this disease, so everything else had to be ruled out first.

I looked M.E up on the NHS website. It was then that I knew instinctively that I had the disease. The symptoms matched perfectly, and the way I felt was exactly as it was described. It was now just a case of making sure that nothing else was worsening my condition.

The first set of blood test results came back all clear, and a second set of tests for viral infections also came back negative.

Over the course of the summer holidays I was told to rest, as the only other thing that could be causing my fatigue was exam stress. If my symptoms had not gone by the time the summer was out, I was to return to the GP. This time, I did as I had been instructed, and although I did some gentle gardening and went for a few strolls, I spent the rest of my time sat or lay down, relaxing. I went out on a few day trips with my parents when the weather was good enough. Almost too soon, the summer had slipped through my fingers and it was time to return to school again, and my symptoms had still not cleared.

The week before I was due to return to school, I revisited the GP. He diagnosed me with M.E, and advised that I took ibuprofen and paracetemol to ease the pain. He also gave me a tablet called ranitidine to control the mild acid reflux and nausea I was suffering from. Then, he referred me to the paediatrician and the physiotherapist at the local hospital. The paediatrician would have to do some more blood tests, alter medication as necessary, and most importantly, confirm the diagnosis, if it was correct. The physiotherapist would start me on an exercise programme called G.E.T (Graded Exercise Therapy), which would involve gradually increasing levels of exercise until I was able to do more. It promised to regain my general health and overall physical fitness. In the meantime, my GP said I was to return to him if I had any more health issues.

I came away not knowing how to feel. There is both and an up and a down side to getting a diagnosis. The up side is that you know what is wrong with you, and therefore how to deal with it, using medicines and physiotherapy. The down side is that you have a diagnosis at all, as this means that there is something wrong with you, and in my case, this was incurable. This does not mean that people never recover from M.E, they do, but that there is no medicine or surgery procedure to speed the process up.

I went back to school and settled down to do my final year of GCSEs. It was nice to be back among people my own age group, and to be studying something again, but I was nervous of over-doing it. As the term progressed I became more and more fatigued, and my symptoms grew much worse. I grew weaker by the minute. I missed countless days off, where I was made to lay in bed and rest. I ended up dropping P.E and dance, and eventually French, ICT, PSHEE, and Maths (I passed the GCSE early). I appeared to be failing all that I could achieve, and just had to hope it would all turn out well in the end.

I was also finding that I had an upset stomach while using the ibuprofen. The pains would sometimes be crippling, and on top of everything else, it was hard to cope with.

I went back to my GP, who, patient as ever, withdrew my ibuprofen. However, he could offer me no alternative but to increase the paracetemol, as I had not yet been seen by the paediatrician. Unfortunately, paracetemol does very little for any pain, even in large quantities, over a long period.

Now I was hanging on more than ever, hoping the physiotherapy would do something to help me. My symptoms were getting worse, and I felt as if I was slipping out of reach. No matter how hard I tried, I couldn’t be happy. I could only see the cloud, and not its silver lining, despite being promised that every cloud had one. I couldn’t even remember what happiness felt like, only the meaning of the word stayed with me. I felt guilty too- if I had listened to the doctor when I had had the meningitis, and obeyed him, I might not have got the M.E at all.

Also, the general perception of M.E was not making matters any easier for me. According to most others I was “lazy” and “attention seeking”, even though these were traits I had never displayed before. I was even told that it was all in my head. I knew I was ill; I was trapped inside my body after all. Mum and dad believed me too, as did the GP, which made things a little better to cope with, but I couldn’t prove it to anybody else, and people like to see evidence.

Having M.E was proving to be a lot harder than it looked.

The Worst Days.

As diabolically insane as this sounds it’s sometimes all too easy to forget just how bad my Chronic Fatigue Syndrome can get. I get so caught up in the managing of day-to-day events like work and chores that I forget the reason why I manage these tasks so carefully, and then a relapse arrives.

I know it’s going to be a tough day when I wake up and can’t open my eyes. It usually takes several minutes and a monumental effort to finally prise my eyelids apart, and it’s rare that I can keep my eyes open for longer than a second or two. When Jarred switches the light on it feels like I’m looking directly at the sun, and usually aggravates the dull throbbing in my head. Even when lying down my muscles feel fatigued and my joints ache, so much so that sitting up isn’t an option, and nausea ensures my constant discomfort.

Jarred will fetch me a cup of water and my medication from the kitchen, as often I cannot face eating anything for breakfast. Then he will go about his daily business and allow me to sink back into sheets and fall asleep.

The sleep I get on these days is not restful, but is broken regularly by short spells of wakefulness before I drift off again. I will dream vividly as I lose track of time, and while the dreams I have when I feel this way are not nightmares, they’re not exactly pleasant either. Eventually, after approximately five of these dreaming sessions, I will wake up properly. I feel more alert and aware of the things going on around me and my eyes stay open of their own accord. At this point I know I will not sleep for another few hours.

Jarred nips in and out of the bedroom between his daily activities to check on me, so I don’t normally have long to wait before he finds me awake. If I think I can stomach it he will make me a small sandwich or a bowl of soup, propping up our pillows on the bedhead and lifting my shoulders, so that all I have to do is shuffle slowly until I’m leant against the pillows.

After eating, if I manage to eat at all, comes the hardest part of the day. My mind will be constantly active at this point, often focussing on tasks that I had planned to attend to that day but my body simply can’t keep up. I grow bored and restless but can do nothing about it. If I’m lucky I might be able to read a book for a little while, but even the smallest volumes make my arms hurt as I read. Often Jarred has brought through a simple board game likes snakes and ladders which at least takes my mind off of my condition for a short while. Sometimes I will lean on Jarred and he will practically carry me into the lounge where I can sit on the sofa and binge watch something on Netflix, but moving me from room to room is difficult for both of us.

As the evening closes in Jarred will offer me another small something to eat, and will then sit on the bed with a basin of tepid water, washing my hands and face for me. By this point it is all I can do not to fall onto the pillows as Jarred lays them flat on the mattress, pulling the duvet over me as I lack the necessary strength to do this. It doesn’t take me long to fall asleep, but I will be plagued by spells of waking and vivid dreams for most of the night.

These spells can last for several days or even for a week or two in particularly bad cases. They are undeniably strenuous for me, but also apply pressure to those around me. Similarly the backlog of tasks not done often makes the recovery harder, as once I am able to turn my attention to them I have so many to do that it is overwhelming. Fortunately these spells are not common; as far as CFS goes, I’m one of the lucky ones.